An editorial in this month's edition of Cancer takes an interesting look at …

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Informed consent is a key factor in any trial of a drug or medical procedure. People volunteering for such studies must be told of the risks, benefits, and alternatives, and be kept up to date as data comes in that may influence their decision on whether to continue with the trial. But what about when the trial is over? There's an ongoing debate over whether and how much the volunteers should be told of the results of the study, and what role they played in it. An editorial in Cancer (subscription required, but a free summary is available) this month suggests that limiting this information may actually make for good medicine, as it can improve quality of life.

It's easy to imagine that complete openness with medical information is the best way forward: everyone should know what has happened to them and what that means. But the editorial makes a compelling case that providing full disclosure within the context of clinical trials may be harmful to some patients. Specifically, the author notes that when two approaches are compared, both are often successful, and the degree of success may be small, even if statistically significant. What if you informed a now healthy trial participant that they received the less-effective treatment? Is there a value to inflicting what may be significant psychological harm on them when there is no possible way for them to retroactively receive a more-effective treatment? The editorial puts it this way: "Thus, one must ask: Does an investigator have an ethical obligation to provide a research participant with study findings that cannot, in any manner, directly benefit the individual but that may result in considerable emotional distress?"

The author proposes a set of informed consent statements that recognizes some of the complexities. For example, some treatments or outcomes may have implications for future risks or appropriate regular screenings; these should clearly be disclosed. Beyond those, the guidelines suggest that the patients themselves be responsible for deciding whether to receive the study's results. What was dissapointing to me is that these guidelines made no mention of using a discussion between the doctors running the study and the patients as a mechanism for determining whether the results should be shared. After all, part of the art of medicine (as opposed the science) includes a doctor determining whether a patient will be harmed more by too much information, or not enough.